CDKL5 Awareness Month

June is CDKL5 Awareness Month

We are fortunate to have an entire month dedicated to CDKL5 awareness! In June, we work to educate and spread the word about CDKL5 Deficiency Disorder and we need all the help we can get!

Why June?

June has special meaning to the CDKL5 community and we recognize June 17th as World CDKL5 Day. Why? Because of Glyn and his lovely family. Read his story.

Take Action for CDKL5

  • Post on social media – use hashtags and share your CDKL5 story (#CDKL5, #CDKL5Awareness) or share what the IFCR is posting! We have prepared an Awareness Packet of downloadable materials for you!
  • Give a talk – get out in the community or contact your local media to share about life with CDKL5
  • Ask your Governor to issue a proclamation about CDKL5
  • Fundraise! June is a great time to fundraise for the IFCR and we have lots of resources prepared to help! Many families participate in our annual “Move CDKL5 Forward” event. It is a fun time!
  • Get together with other CDKL5 families. Take advantage of the beautiful June weather!

Whatever you choose to do, we’d love to hear from you! Please tell us how you are spreading CDKL5 awareness or tag us when you post on social media. We’d love to reshare your efforts!